Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Everytime I Looked Up My Symptoms It Came Up with Everything BUT Ulcerative Colitis

The horrors of UC so far for better life, anyone?

I was diagnosed with Ulcerative Colitis in late ’08, I had symptoms starting mid ’08 but I had no idea!

 

My Colitis Experience:

I tossed “frequent, soft, runny, bloody, bowel movements” into Google when I started having this crazy problem with just those issues. Apparently dogs, cats and infants only have these issues. Ha. Since diarrhea was the most common theme of any and all web searches I figured it would go away eventually. 2008 my job was shafted due to the economy and I’m sure my slowly disintegrating work habits didn’t help. I was in the bathroom constantly between 30-70 minutes at a time and had no control of when or where.

I gave up on the idea this was going to fix itself and went to urgent care where they did a sigmoidoscopy then referred me to the gastroenterologist.

My gastroenterologist put me on an enema and suppository,

I told him this wasn’t cuttin it after a few weeks.

I went back to him and after some talking he then put me on Asacol without doing any exploratory surgeries like colonoscopy, a sigmoidoscopy with biopsies, nothing. 2 weeks into Asacol, bed and bathroom ridden, bowel movements already up 200% from the moment I walked into urgent care. He said give it 4 to 6 weeks to kick in… So I was blindly following instruction.

My doc’s assistant calls to schedule a colonoscopy. Sweet, maybe some real answers! The moment they mentioned colon cleansers for the surgery I cried for about 3 hours. My body was so raw already from being constantly in the bathroom I didn’t know if I could handle 12 hours of nothing but sitting on the toilet flushing my system. By the time I sat in the car to get my colonoscopy it felt my flesh had been eaten away by straight acid. Nurse puts my IV in wrong so now my arm is burning too. So get everything adjusted, I’m in the room, take my 4 deep breaths, under conscious sedation and doc says he’s ready to start.

Now you have to understand…

My doctor is 6’4 and one stocky dude; he’s got huge hands.

My nurse is holding my hand saying squeeze if anything is painful. No problem right? My doctor lubes his thumb and shoves it into my anus. I pulled my nurse onto the bed with me like she was a stuffed animal. She’s maybe 170, 5’9. I’m a 150 lb, 5’7 female I tossed that poor woman like a ragdoll. Needless to say the biopsies came back positive for moderate to severe UC.

Options at this point? My doc gives me roughly a year before my colon will likely be removed if we didn’t act harshly and quickly. Wait a minute Dr DreadUWhenICU… If Asacol is giving me 200% worse symptoms… doesn’t that basically wash my colonoscopy results?! He didn’t have anything to say to that question. I nixed my Asacol regimen completely and was already starting to feel better. It’d been 4 weeks, I felt amazing, I didn’t care I went to the bathroom 9 or 12 times a day for half hour, I didn’t feel like hell and that was good enough for me. He decided to me on Prednisone 4 weeks after I’d taken myself off Asacol to “keep the inflammation down.”

Over the next 4 weeks I gained 80lbs I can’t seem to lose,

went from anti-social to sex beast!

My UC? No change.

So that would have been great if I was a wrestler…

I nixed Prednisone and asked him what’s next? He said 6-MP, infusions or colon removal, bordering on 6-MP would be a waste of time. I got a second opinion from another hospital, they just agreed and said good luck. I said I can’t go that far yet, there has to be something… something somewhere in between. I put everything off about a year… then I had a relative died from being on immuno-suppressants in 2010 so this leaves me with colon removal and I’m not about to make that leap with this doctor. He refers me to a specialty center.

Doctors a cool guy, for the first time I’m explained what UC is in plain English, he looks at the original colonoscopy, the medications, my symptoms and looked at me dumbfounded. He said lets do a colonoscopy now that you’ve been off all medications for a year and see what’s really happening. I finally got a straight answer. With this doctor’s test I have mild to moderate UC, yay!! The left and right sides of my colon have moderate irritation. Currently I have 6-8 medium, soft bowel movements a day between 20 minutes to an hour and while that’s not ideal it’s better then what I started with… one issue I have is getting sick easily… are immunomodulators or suppressants worth the risk of turning the flu into something much bigger?

Same options for my mild to moderate UC as they were from my “moderate to severe.” Imuran, Remicade and Humira (Humira is coming out as a medication for UC in a few months.) With side effects and serious side effects listing a mile long for all of them I have no clue what I want to do. Side effects are one thing… the risk of every other cancer is increased significantly. Pills once a day, infusion every 8 weeks or a shot every other week; what do I do?! None of these seem like viable options or even worth the risks.

I’m scared as hell to do any of these meds!

So here are my questions to the world, though I do realize these can’t really be answered.

  • Are the risks associated with these medications equal/greater then the risks of colon cancer worth it? (Leukemia, lymphoma, blood irregularities, liver issues, and drug-induced lupus… the list goes on for days.)
  • Are the soft frequent bowel movements I could have on these medications better then the soft frequent bowel movements I already have?
  • Are the people who had their life totally changed by these drugs going from severe to mild UC? Mild to ‘cured’? Moderate to mild? (Anyone notice that by the way? They never tell you specifics, just that ‘one in five patients felt better,’ what’s their range of better?)
  • Are some so frustrated with mild UC that they think medication is giving them a cure so they are less stressed they’ve changed their lifestyle and their UC over time disappears? This happens a lot and not just in movies… but these “results” count toward their medications statistics as a positive.

Colitis Medications:

Asacol – The worst drug I’ve ever been on in my life felt like I was hit by a freight train and left to die only emphasized by the fact it made my UC 200% worse. My doctor put me on max dosage to try and ‘get a hold of my UC.’ Worst mistake of my life.
Apriso – I wanted to make sure it was mesalamine causing issues, not the delivery system, same deal as Asacol.
Prednisone – The second worst drug for me in the UC world, gained 60 lbs I can’t get rid of, major swelling in my knees and ankles and didn’t do a damn thing for my UC. It made me feel hyped up and if I didn’t exert any energy for one day I feel like hell for three.

Submitted by “Bored in Nowhere USA”

in the Colitis Venting Area

 




5 Responses to Everytime I Looked Up My Symptoms It Came Up with Everything BUT Ulcerative Colitis

  1. david November 23, 2011 at 2:06 pm #

    Hey, been down the road your on. I had the same feelings about remicade as you did. i talked to my GI about side affects and what not. He told me he has never had anyone have anny major issues with it. when you start remiade they send you a concent form to fill out and it gives you the studies they have made, The only people that have gotten cancer or had any major problems with were lil kids and they were taking some other drug with it. so after all that i figuerd what the hell, I have had three infustions now and im doing better, I wish i could say i was having solid craps and felt like a million bucks, but i had a bad case of UC and my GI doc said it was going to take some time to get back to normal, but I can eat things now that i would have never touched before, less trips to the shiter. the only side affect i am having is some lower back pain. I have a bad disk in my back and it seems to be messing with it. oh and you better have some good insurance, each infustion is $7400.00 I only pay my 45.00 co pay so thats not bad, im sure blu cross just loves me! So i say go for it, get off that horrable Prednisone as soon as you can!!! you can read my story on here as well, rage against the UC. hope you start feeling better soon the crap sucks! sorry about my spelling hahahaha

  2. Adam
    Adam November 25, 2011 at 2:58 pm #

    Yo Got some seriously Good questions, my guess is that if other people aren’t thinking about these questions now, we all will at some point.

    Pretty tough questions too, and I think most answers would probably be opinions to some degree, even if there are “medical studies” relating to them. It seems that sometimes the mdecal studies can conflict etc…

    but anyways, I’m medication free right now, and I think that’s pretty cool. But, I can say that for your question #4, just being on medications back in my days of being in a flare, gave me some sense of security, thinking that I was dong the right thing, and at the end of the day, that’s worth alot in and of itself. no matter if the meds are working or not.

  3. Rebeka
    Rebeka November 25, 2011 at 4:57 pm #

    Yea, those are some questions we’re plagued with… I wonder about the side effects too, is it really worth it? And then I remind myself of how bad things were before.
    Those tough drugs though, they have some insane side effects and I have been lucky enough not to need them yet. I would probably opt to try them. At the point when I was admitted to the hospital no acupuncture, meditation, positive thinkig, herbs, or diet would have made me better. I needed to be helped with medicine, as I was already trying all those other things. There’s just a point I think where we need to admit defeat.
    About question four: I have started out with medication that clearly did not work for me, even though I was extremely relieved and hopeful when I started them. My emotional attitude did not matter apparently, because the meds didn’t do anything, I just got worse. Then, the second type of medication, I started taking with a more scared and skeptical attitude but I got better. Once I started feeling results is when I started relaxing again. I could imagine that for some people it goes like you said. Also, it is true what Adam said: The meds give me a sense of security. But so does everything else I do to feel better, knowing I am taking care of myself, helping my body get well. That’s not just from the meds.
    I’m so sorry you have had such bad experiences, that 6’4 doc sounds intimidating. Glad you are dealing with a new specialist now. I really hope you find something that will help you get well soon!

  4. Hannah November 29, 2011 at 9:44 am #

    Its difficult to answer a question of risk vs benefit for drugs simply because everyone is different on what risks they are willing to take. Every drug poses a risk – including tylenol. What works for you may not work for others. Personally, I’ve had UC for 36 years now (Im 46) – tried every drug out there until they no longer worked and am currently taking Humira as well as trying to taper off prednisone right now. Each flare is unique and the intensity of the disease may vary. I was originally diagnosed with mild to moderate but I am severe full colon now. Could this be from taking Remicade 7 years ago? who knows. All I know is that I need to get it under control and go on living. The least of my worries would be colon cancer since removal of the colon would be the next step. I had the drug induced lupus on Remicade but only after 11 months of taking it and it was an amazing drug. The Humira is basicly the next generation – less side effects and much easier to take since you do it yourself! One day at a time right now…

  5. Lara
    Lara November 29, 2011 at 10:56 am #

    Wow! You really have had a rough time. I really hope things get better for you soon. I would recommend that you keep asking questions to your doctor. There are many treatments out there & hopefully you’ll be able to find the one that best works for you. I am able to answer 2 of your questions:

    •Are the soft frequent bowel movements I could have on these medications better then the soft frequent bowel movements I already have?
    Anything that I took in pill form caused me to have ZERO soft frequent bowel movements. I basically lived in the bathroom. Once I got on Remicade I started getting them within a few days. I was originally at 10+ times per day. Now I’m down to 2-3 times per day (sometimes more if something doesn’t agree with me). Personally I think that going to the bathroom less frequently is a wonderful trade-up.

    •Are the people who had their life totally changed by these drugs going from severe to mild UC? Mild to ‘cured’? Moderate to mild? (Anyone notice that by the way? They never tell you specifics, just that ‘one in five patients felt better,’ what’s their range of better?)
    I swear that getting on Remicade has changed my life for the better. I go every 8 weeks for my infusions. It isn’t too bad. I usually bring a book or my mom comes with me & we “hang out.” My GP was happy with my improvement when I saw her last week. I go see my GI dr tomorrow & I can give a much better update then.

    Seriously though, ask all the questions you can. Do TONS of research. I’m like you. I want to avoid surgery at all costs & I’ve made those wishes known to my doctors. You should do the same.

Leave a Reply